Ten years ago at age 12 I gave a speech at the first annual Cure for Mito auction. Last year, as I was preparing to give another speech at the tenth Annual Cure for Mito auction, I reread the speech I wrote in seventh grade. It was disorganized, full of errors, and completely characteristic of seventh grade work. It did however accurately track my experience with Seattle Children’s Hospital and mitochondrial disease. At twelve, I had just overcome many of the medical hardships I faced in childhood. I was just beginning to see a life beyond doctor’s appointments and uncertainty. At the time I was unaware that this was huge. It was the first time in four years that my parents could see a bright future ahead for me.
Ten years later, I have finished college and am worrying about what I am going to do in the real world. Given my past experience, if that is my biggest concern right now, I am more than pleased. That is my story.
The stories of others are quite different. Ten years ago mitochondrial disease was still an unknown thing. Because there were no treatments, it was believed that most kids with mito would not live to see their teen years. But the future for all of us with mito is changing. Through the guild I have been introduced to so many wonderful kids who are exceeding every expectation for them. As one of the oldest kids in the guild, I have watched a number of children grow up over the years and it has been incredible to witness the progression. I have seen surgeries that allowed wheelchair bound kids to walk. Kids who weren’t able to speak for years, now talk my ear off! Parents who were told their child wouldn’t make it past toddlerhood are now raising teenagers. It is amazing to see how far all of these children have come.
The road of progress is not an easy one however. Throughout the last ten years these kids have been through every obstacle in the book. Physical therapy, speech therapy, surgeries, unplanned ER visits, wheelchairs, specialized diets- the list for them goes on and on.
While these could get any person down I can tell you I have never seen such a well-spirited group. This is evident each year at the guild picnic, where these children play, laugh, and eat together. Each and every one of them demonstrates enthusiasm, courage, and a childhood spirit that helps them and their families fight this disease. Each child is successful thanks to the dedication of their family, the work of the doctors and the support they receive from other families in the Mitochondrial Research Guild.